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A New Normal - DX: gastroparesis
Saturday July 5, 2008
A friend who is going into surgery soon to (hopefully) fix a botched surgery that left her totally without feeling on one side asked everyone at church to send her inspirational quotes, Bible verses, and stories that she could print and take to the hospital with her. If you know of any good ones, I'd really appreciate it if you would click on "comments" below and post it there so I could copy and send it to her.
This is what I sent her. It took me awhile to find it. I knew I had it from when I spent so much time in the hospital in 2005. I'm glad I found it. I think I needed the reminder myself.
A Healing Variation of the Serenity Prayer - by W.S. Harpham
God, grant me the
Serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.
Patience to wait when healing requires time, courage to undergo more treatment when needed, and wisdom to know the difference.
Discipline to weigh good options, courage to reject bad advice, and wisdom to know the difference.
Freedom to nourish realistic hopes, courage to abandon false hopes, and wisdom to know the difference.
Composure to trust my doctors and nurses when they have all they need, courage to question my doctors and nurses when they may need more, and wisdom to know the difference.
Determination to be independent when I can, courage to ask for help when required, and wisdom to know the difference.
Power to repress upsetting thoughts that only hurt, courage to work through upsetting thoughts that can help, and wisdom to know the difference.
Stamina to keep pushing when it can improve the outcome, courage to adjust when now is the best it can be, and wisdom to know the difference.
Energy to be with people who care, courage to avoid people who pull me down, and wisdom to know the difference.
Persistence to pursue goals that inspire, courage to let go of goals that only frustrate, and wisdom to know the difference.
Flexibility to shift direction from a failing approach, courage to stay the course when it deserves more time, and wisdom to know the difference.
Vision to appreciate what remains, courage to grieve what’s been lost, and wisdom to know the difference.
Humility to pray as if everything depends on You, Courage to act as if everything depends on me, And wisdom to do both.
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Talking to some people who've had GP longer than me, I found out that some of the things I've been eating - thinking they were "simple" foods - could have been making me feel worse. For example, rice causes constipation. I guess I would have known that if I ever had kids, as one referenced a "BRAT diet" as foods you give kids who have diarrhea to get them to stop: Bananas, Rice, Apples, Toast. So I will be avoiding those henceforth. Also, apparently, for some people Boost & Ensure can cause bloating. For some people it's okay, but for others, not. I have to figure out which it is, for me. They suggestion Carnation Instant Breakfast drink, with the addition of whey powder for protein. I'll look into that, anyway, just to be prepared.
Apparently the intense cramps I had couldn't have been caused by the Miralax as it's only a stool softener, not a laxative. But severe cramps can be one of the symptoms of GP, especially when you've eaten "too much". I'll be calling my doctor on Monday to talk about this.
Stress exacerbates it. Somehow, this doesn't surprise me in the slightest. My job is inherently stressful. And, of late, some family intra-personal stuff is stressful. On the other hand, I have a four day weekend and I live alone and I can choose not to bother to check my e-mail for awhile.
Today was pretty much okay most the day. I didn't try to eat anything fancy because I was scared of more like the last three days. So this morning I slept in, then had an egg & toast & juice; then 3/4 c. of mashed potatoes for lunch; a small smoothie for mid-afternoon snack; about a cup combined of cottage cheese and canned peaches for dinner, and about 7:30 I had dessert: 1/2 c. sorbet. It worked I felt good most the day (well, til I checked my e-mail).
After I slept in, I cleaned today. So okay, it's not very festive, but it's done & I can simply enjoy the rest of the weekend. That made it a good day to me.
Jo
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Wednesday July 2, 2008
Hmm...that's what comes of going to bed so late, it looks like I have three posts today, though to me, two were "yesterday".
I've still been in quite a bit of pain today. I feel like somebody's been kick-boxing in my innards. And most of today I've been very bloated with a hard distended abdomen - like trying to squeeze a basketball. Just this last hour I'm finally able to squish my fingers into it some. But it all (stomach & guts) still hurts.
Today I've tried to put very little stress on my stomach. I had a Boost for breakfast, 1 c. jello for the 10:30 AM feeding, another Boost for lunch, a little over 1/2 c. pudding for the 3:30 PM feeding, and a cup of white rice for dinner with two jello cubes. I'm starting to feel hunger again, but as it still hurts, I have to tell you, I'm afraid to eat.
I've been trying to figure what caused this all. Could it be that the leftovers from my night out had too much fat in it &/or may have been too big? I'm also wondering if because the doctor told me I could get better eventually, my mind transposed that to "soon" and I began pushing the boundaries in the amounts I was eating this week, both at individual meals & in the whole day, and it just became too much? Thinking back I could have done that just by adding a 1/2 c. or cup here or there because it was something I wanted. I don't think I can physically do that yet without repercussions - well, obviously not, but I had no idea that the repercussions would feel so bad, for so long! This is the third day of this. I really have to remember to only eat little bits at a time, no matter how much my head or emotions want. It's hard to do, you know that? It doesn't feel wrong at the time, but hours or a day later, it's just real bad. That's what makes it hard to do a food diary. If something is going to go wrong, thus far in my experience, it doesn't go wrong right away. It goes wrong anywhere from fours hours later to a day later, and in between of course I've had other meals, and I can't figure out which one went wrong or whether it was an accumulation or what.
This condition sucks. Food and trying new restaurants and recipes was such a big part of the pleasure points of my life before. I keep praying that God help me appreciate what I do have and not dwell so much on what isn't possible right now. Especially as I know I don't have it so bad. It works most of the time, but there are days where I just can't get there from here.
So You Think You Can Dance is on tonight. I will immerse myself in that. I love watching dance like that, and it's a fun show.
| | Posted by JoAllison at 7:41 PM - | |
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As you might imagine, eating smaller meals of such a restricted diet, it can be difficult to make sure I get all my vitamins. Because gastroparesis interferes with digestion, people with the disorder may be deficient in important nutrients, including vitamin B-12, iron and calcium. It is difficult for my stomach to digest pills, so I have found a liquid multivitamin and a separate liquid calcium in a gel capsule.
Centrum has a liquid multivitamin that doesn't taste bad. Nature's Way Alive! has one too, but be warned, it looks and tastes disgusting (to me). As everyone's tastes differ, it might be perfect for someone else. I've just found out that GNC also has a liquid multivitamin which I plan to try as it's a little cheaper than the Centrum.
My calcium supplement in the liquid softgel includes vitamin D. It is made by Nature Made.
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Okay, I'm going to talk about some stuff in this post that I would normally never mention in a public blog, or public anywhere. Heck, I'd have problems talking about it with a friend. But if I'm staying true to my underlying purpose of creating a blog on what it's like to live with one of the milder versions of gastroparesis so that someone just getting the diagnosis who googles it doesn't only find the scary stuff, then I have to talk about some of the more unpleasant personal aspects as well.
Part of one of the aggravating things about this condition, based on my own experience and on reading about others at the support group (http://health.groups.yahoo.com/group/gastroparesis/), is that what you can eat without repercussions one day causes problems on another day, for no discernable reason. I had a good time out with my friends the other day and was able to eat dinner without any problems, and I took more than half my meal home to eat later. Monday I took the rest of the entree to work to have for lunch. By the end of the day I was in pain, medium grade, burning in the upper central right abdomen, and I was bloated as hell. I also realized that I was constipated, again; that has been a recurring problem of late. In order to deal with the latter problem the nurse practitioner at my GI's office told me to take Miralax. I did. That doesn't work right away, and in between the gas bloating increased substantially as did the heavy crammed feeling. That continued into today. I had a small smoothie for breakfast; I wonder if that helped or hindered? Then about mid-morning, at work, I got intense cramps (& ran to the bathroom), where I found that the Miralax had done its work. But I don't feel better. I still feel bloated, gassy, crampy & overly "full" throughout my whole abdomen. I just don't feel good! It feels like somebody has been kick-boxing in my tummy.
I suppose I could have picked up a (hopefully) one-day bug somewhere and that it's not related to the gastroparesis, but I don't think so. I've got no fever or other non-abdominal symptoms.
I think I'm going to go back to an all liquid diet tomorrow & give my tummy time to recover. One piece of advice. Buy some Ensure or Boost & keep it in the fridge for bad days. It has the nutrients & calories to keep you going. I've read that some people use Slim-fast too, but I'm scared to use something with that level of fiber. Broth works, as do juices. (I suppose Gatorade would work too; I just don't like it.)
Jello is considered a liquid, so you can eat that on liquid days too. Depending on the day, you might also be able to do puddings/custards, milkshakes, yogurt, applesauce, baby food. On a slightly better day, add simple easy to digest carbs: baked potato, white or sweet (no skin); white bread; pasta; white rice; saltines.
Well, I'm going to go make some jello for tomorrow, and then go to bed.
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